It was early autumn 1992. A warm day full of fiery sunshine and dust sparkling in the wind.
Above my head were Hebrew letters made of paper, hanging on strings of dental floss. I leaned against a cinder-block wall and stared nervously at a slim, darkly tanned woman with nascent wrinkles and a pair of oversize sunglasses on a beaded chain. The expert. She sat on a high stool and looked through a wide rectangular window at the playground. The outside of the glass was smeared with greasy sand and fly guts. We were on the clean side, observing my son.
The room was cool, but I’d begun to sweat. I held as still as I could, making silent deals. I’d called this woman, begged her to fit us in, and petitioned our insurance company to cover her enormous fee, but now I wondered if I’d made a mistake. Suddenly it seemed possible that a mother could cause something to happen to her child because of whom she chose to consult. Invite the vampire to cross your threshold, and one of your children becomes undead.
To the left of the expert’s head, I could see Andrew: my son, her quarry. He stepped over the wood-beam side of the sandbox, found a ragged patch of grass, and squatted, rocking on the balls of his feet and gazing blindly at his own hand in front of his face. The woman shifted on her stool, stretched a little, and pressed her fingers against her lower back.
“Typical,” she said.
I spoke to the tangle of dark hair tied at the back of her head. “What?”
“The stance.” She beckoned me over with two fingers, then pointed.
But I didn’t step forward. I didn’t want to watch him. I wanted to keep seeing the sweet baby pictures inside my head: matted-down crib hair, surprised laughter, fat knees, fuzzy pajamas with feet attached.
The expert turned to see why I hadn’t responded. Slowly I walked to the window.
“You see that?” She pointed again to the creature who had replaced my child. I could see his face now. He was grinning, one hand covering his eyes, the other thrown limply above his head. His body hiccuped with private laughter. “That’s textbook.”
She climbed off the stool and picked up a big leather bag stuffed with folders and an oversize datebook. Then she smiled for the first time since I’d met her. Clutching her supplies, she looked for a moment as if she were leaving for a weekend trip. Wherever she was headed, I wanted to go, too, and leave that room forever.
“It’s classic autism.” She readjusted the bag on her shoulder while I gagged and felt a huge, crushing impact: nothing would ever be the same.
“But what about the late onset?” I asked. “I’ve read that it always shows up before the age of three. He was nearly four when the symptoms began.”
She shrugged as she rooted in the bottom of her purse and pulled out her keys. “What does it matter? He’s definitely autistic now.”
I moved back to my spot against the wall. Outside the window, Andrew was hunched low in the grass, rocking on his heels, head tilted back as if he were drinking in the warmth of the sun.
When the expert left, the heavy door’s closing caused the letters hanging from the ceiling to dance.
This was before autism was in the news, before one out of every 166 babies born in America was being diagnosed with some form of it. The movie Rain Man was my only point of reference.
And I was alone that day in the Minneapolis Jewish Community Center’s preschool room — with the empty shell of my child in the distance — because in four years of marriage we’d never been able to afford for my husband, Jim, to take a day off work.
Somehow I drove home, bleary-eyed, crossing lanes of traffic, only faintly aware of the keening from the back seat. On the way, I collected the baby — Andrew’s younger brother — from my mother’s house, shaking my head and crying quietly when she asked how the appointment had gone. By the time Jim came home, tall and sober in his midnight blue police uniform, I had fed the boys and set them in front of the TV, then crawled into our bed, door open so I could hear them, blankets gathered around me like a shield. Murky light puddled on the floor. Jim stood by the bed and touched my shoulder. When I flinched and turned away, he lay down behind me, still wearing his heavy boots, and I curled up even smaller, as if trapped inside an egg. Slowly, while facing the wall, I told the story of the expert and the fly-smeared window. After I’d finished, he squeezed me tight and said one word: “Bullshit.” And I felt the weight that had been pressing on my chest lighten.
“He’s no more autistic than I am,” my young husband said. The books, he reminded me, all described a baby who arched away from contact and had screaming fits and was alienated from its mother. We’d experienced none of this. Andrew had been a large and placid baby, a poor sleeper, but warm and affectionate and wise. He’d met our eyes at three days, spoken his first word at eight months, and hugged us tight, his chubby arms flung around our necks.
Jim glowered, imbued with the authority of his uniform. Our son was not disabled, he insisted. Not impaired in any way. Andrew was simply taking a break, the way great thinkers sometimes need to do. He was processing information within the complex circuitry of his superior brain. He was highly advanced, that was all. He’d come back to us. I’d see.
The next morning I called our school district and asked them what to do. Three transfers later I was speaking to the early-childhood specialist. “I’m sorry,” he said when I told him about the diagnosis. “That must have been awful for you.” Remembering Jim’s words from the night before, I bristled. How dare you make it sound like a death, I wanted to hiss. Instead I tried to coax him over to our side. “What’s the best-case prognosis for a child like ours? Will he start speaking again? Learn to read? Go to college? Get married?”
I was standing in front of the washing machine, clamping the phone between my shoulder and ear, tossing clothes into the drum from a small wicker basket. There was a pause at the other end of the line.
“About speech, yes, I think you should be optimistic,” the specialist said carefully. “If we get him into a program right away, there’s every reason to believe he’ll recover some language. And, with time, he may be able to read. But life is hard for these kids. College is unlikely. And marriage? Almost certainly not. He’ll never be able to form close relationships the way you and I can.”
These kids. As if there could have been another child on earth with the profoundly wonderful eccentricities my son had. I heard Jim’s voice in my head: “Our son isn’t disabled. He’s amazing. He climbs like a mountain goat. So he doesn’t talk; neither did Einstein at this age. Don’t believe anything these shitheads say.”
I thanked the man — at least, I think I did — and hung up.
I went on a crusade for information, researching doctors, therapies, and schools. With each contact I made, I would go through a long explanation: My son wasn’t really autistic. The symptoms had come on late and were receding quickly. I just needed information that might help me bring him out of his temporary fugue.
Some people were offended. Others acted puzzled: if I didn’t have an autistic child, what was I doing talking to them? I kept explaining that the best way to help my son seemed to be to treat him as if he had autism while waiting for him to blossom into the boy he was meant to be.
Meanwhile, in the background, there was Jim, the man who’d been my hero since I’d met him in a college bar. Back then he’d been a printer and itinerant student: a tall, gentle, bearded biker with thick glasses and a crooked, twice-broken nose. He hung on the edge of a group of hard drinkers, but none of them appeared to know him well. I felt as if I’d known him since before I was born. His parents — God-fearing Iowa people — later told me they were disappointed because he’d been brilliant as a young boy but had never finished college or found a career. No one understood Jim except me. This man was simply too fine for the regular workaday world, too interesting to be a lawyer or a banker. I married him less than six months after our first date.
By the time Andrew started kindergarten, my husband was working as customer-service manager at a local paper company. The police job had lasted only five months and ended over a complicated disagreement involving an abusive sergeant, mandatory psychological testing, and a no-fault probationary clause the city only rarely invoked to fire people.
“Assholes,” Jim told me. “They’re bullies, and I wouldn’t play their games.” He told me about an incident in which a suspect had been pushed down a flight of stairs and another in which a fellow cop had assaulted a homeless man. I had trouble seeing the connection between these events and Jim’s dismissal, but I had Andrew’s needs to worry about, and I quickly forgot about my husband’s career upheavals.
Besides, Jim’s office job came with magnificent health insurance, and it let him be home in the evenings to help with Andrew. When I discovered a kinesthetic method for brain stimulation, Jim threw himself into it with the sort of religious zeal he brought to all the activities he loved: bicycling, cooking, drinking. He would come home after work, take off the tie he loathed, start in on a six-pack of beer or bottle of wine, and disappear with Andrew to put him through the “brain gym” he’d devised in our attic.
We had a third child by that time, and I would sit and nurse her and listen to Jim’s voice drifting down the stairs — low, encouraging, softened by the alcohol: “Great, sweetie, just one more time. Crawl slower now. Can you see what I’m holding? Can you tell me what it is?”
One night, as dusk was gathering, there was a pause in Jim’s litany. I thought it was a silence. But then I detected a tiny sound: my son’s voice. “Watch,” he said.
And Jim’s voice floated after his, like a ribbon through the dim gray air. “That’s right.” It caught, as if my husband might be crying. “It’s my watch. That’s the word.”
Over the next three years Andrew learned how to read and ride a bicycle and sit facing forward in a classroom. He could carry on a conversation, though it would be punctuated with sudden laughter or unrelated words that seemed to have materialized from the ether: asparagus, thunder, frog.
The people who thought our son was autistic told us he would either get better or get worse when he hit adolescence. “Hormones,” one mother said, shaking her head. “They affect our kids even more than others.”
I gritted my teeth. She was a nice woman, a friend of my parents who’d recently had her twentysomething son diagnosed after years of dysfunction and false starts. He was a bag boy at our local grocery store, a dour young man who looked at his shirt buttons when he muttered, “Paper or plastic?” I hated them both.
Andrew was nothing like this boy. He would, I was sure, continue to ascend, merging his newfound skills with the remarkable ones he’d had since birth: watchfulness, lack of fear, an unerring sense of direction, the ability to stand so still a bird would light on his hand. And if I was sure, Jim was certain.
Even as Jim remained doggedly optimistic about our son, his own situation was deteriorating. I cannot pinpoint the moment or event that signaled the start of his descent; where my husband was concerned, there always seemed to be a downward spiral of depressing circumstances too interlocked to parse. First his company was purchased by a large corporation, and his new bosses relieved him of all managerial responsibilities. He left in a fury to disguise his shame. Then he went to work as a sales rep for an out-of-town vendor. He met biweekly with his new boss — a South Dakota paper magnate who visited Minneapolis primarily to golf — to talk about purchasing and inventory.
But mostly, during those years, Jim drank.
He’d been in and out of twelve-step programs since I’d known him. The cheap whiskey and marijuana he’d used when we’d first met had given way to what I thought of as more “refined” substances: red wine and dark, imported beer. In between there were periods of tenuous sobriety marked by an avid allegiance to Alcoholics Anonymous. The meetings had the effect of turning my husband into a proselytizer: vapid, complacent, a little dead-looking around the eyes. Frankly, I preferred the high-spirited addict.
Once the kids were all in school and I’d begun working outside the home, I realized how utterly alone my husband was. He moved through his days — from morning sales calls to dinnertime — without a definite plan, without an office environment to give him structure, without regular contacts or colleagues to meet for lunch. When the arrangement with the South Dakotan imploded after less than a year, Jim was left not only unemployed but deeply in debt.
I couldn’t figure out what had happened to the quiet man who’d come home to kiss me sweetly and heal his son. In a moment of weakness, I mentioned my confusion to my father, and he scowled.
“Your husband’s got real problems,” Dad said, putting one hand on my shoulder. “He has absolutely no judgment when it comes to people, and I’ve never met a man so unrealistic. It’s like he decides what he wants to be true, and then he believes it, no matter what the evidence to the contrary.”
It was on Jim’s thirty-eighth birthday that everything came to a head. He was still out of work, and we’d lost our house. He was drinking a great deal. I was wearily caring for our three children and nagging him, I’m sure. That night, sitting in the living room of our cheap apartment, tired of arguing over financial topics, we turned to others.
“Do you realize,” I said at one point, “that in a dozen years of marriage you have never brought a single human being into our relationship? We’ve never gone out with the people you work with. There’s no friend from high school, someone hanging out with you in the garage on weekends, someone whose wife I might like. Why is that?”
He was very drunk by this time, but still speaking clearly. “I’ve never had a friend like that, other than you,” he said. “I think it’s because I’m mildly autistic.”
And I nodded, seeing — or, perhaps, remembering — that this was true.
Andrew flourished in middle school. For the first time in his academic life, he’d been completely mainstreamed, with only a special-ed caseworker to monitor his progress from afar. He talked almost easily to other students. He was attractive and suddenly coordinated, playing second cello in the school’s orchestra. It seemed that Jim had been right: Our son was fine. Better than fine, in fact. He was thriving.
But his father was not.
After Jim’s birthday, there had been a marked descent in our relationship. Our marriage lasted another two years, but they were miserable ones, marked by drunken episodes, rising debt, and painful separations. When Jim left on Labor Day 2000, it was the final break.
The children and I regrouped and grew even closer while their father lurched haphazardly around the country. Jim lived in an abandoned church in Iowa for a year, then escaped to New Orleans, where he slept in his car and on the bayous, drinking cheap liquor, lining up with other itinerant workers for temporary jobs each morning, and, he admitted to me once with deep embarrassment, sometimes stealing in order to feed himself and buy more booze.
But all this time, while going through the legalities of a divorce, we kept in touch. Autism is a strange, fierce, and wonderful condition, I’ve found. Though it may prevent someone like Jim, or Andrew, from interacting freely with the world at large, if you are lucky enough to make contact with such a person — to catch a glimpse of the furtive, naked soul ill-clad in a human body — you never want to let go.
I wish I could say that’s where our story ends. I wrote a novel in which this is the case, and Jim read the manuscript in pieces that he downloaded at libraries all over the South, sending back careful edits. When he’d used up his allotted twenty minutes at the public computers, he’d sign off and stand in line again to continue. The final pages of my novel reflect this time of collaboration and acceptance: the son is moving forward, however tentatively; the father is strong and noble enough to stay away and protect the family from his own darkness.
In real life, however, our golden period did not last. By seventeen Andrew had sunk back into his earlier confusion: tics emerged, and his language refragmented. He began laughing again at inappropriate moments — a troublesome trait in a toddler, but downright frightening in a 240-pound, six-foot-two-inch teen.
Jim, too, hit another rough patch. He’d been sober for a few years, but at forty-three he arrived back in Minneapolis impoverished, estranged from his children, and physically scarred from hard drinking and half a decade on the road. I offered — for the sake of our children and because I’d meant the vows I’d made at our wedding — to fold him back into our family, to start over. But he stalked away in a rage that, even knowing what I knew, was hard to understand. Everything made him grow more hopeless: his job as an upholsterer, our fifteen-year-old’s sarcasm, George W. Bush’s reelection. Gone was the man who’d once thought everything would be fine, if he just believed it hard enough. Without that trait, he appeared inconsolable.
Then came the night when the tender, wistful child I’d known for eighteen years turned angry. He’d had a string of disappointments: friendships that hadn’t worked out, job interviews that had yielded nothing, a failed English exam. I criticized his disruptive behavior at dinner, and suddenly he was wild, sweeping things off the table, lunging at me with his fist. His younger brother, a defensive lineman for the high-school football team, dove across the table and tackled him.
It was like a car accident, abrupt and unstoppable. We were all breathing hard. When I separated the boys, Andrew came out swinging again. Finally, as much to shock him as anything, I picked up the phone and called the police. “My son seems to have lost control,” I told the dispatcher, my gut clenching with nausea and grief. “I’m afraid he’s going to hurt his brother.”
The ploy worked. Fascinated and horrified, Andrew collected himself and went outside. I watched out the front window as three officers approached my son, who rose calmly from the step where he’d been sitting, waiting for them to take him away. They moved around him like the Lilliputians around Gulliver, securing his hands as they spoke.
One of the blue-uniformed men came and knocked on our door. “Does your boy have a disability?” he asked.
I stared at him, unwilling to answer. And that’s when Jim drove up.
Our daughter had called him. He lurched out of his car looking ragged, with stained jeans, a torn T-shirt, darting eyes, and a wiry gray beard. “Stop, please. Give us a minute,” Jim said to the police officers. Then he pulled me aside. “Christ, Ann, what were you thinking?” he hissed. “Don’t you know this could ruin his life?”
“I was afraid,” I said. And then, accusingly: “You weren’t here.”
He narrowed his eyes at me, furious, jaw twitching. “He’s eighteen now. If they arrest him for assault, it’ll go on his permanent record. He won’t be able to travel freely or get a college scholarship or a government job.”
I had no idea if any of this was true. I didn’t care. “You still think that’s possible?” I asked, wanting more than anything to hear him say it. “College? A real job?”
“Of course it’s fucking possible,” Jim snapped. He was back, the man whose belief I’d relied on. “Now, tell them to let him go.”
I did, and the officers were happy to comply. “Got everything under control?” one of them asked Jim. And he nodded, with absolute certainty.
After the police had gone, father and son stood on the step together, shoulders hunched against the wind.
“Get your things,” Jim finally said to Andrew. “You’re coming with me.”
Andrew looked at me, and I nodded permission.
Moments later I sat in the living room, a glimmer of hope for my son still flickering inside me, and watched out the window as Jim and Andrew drove off, taillights glowing like two red eyes in the muddy black night.